Life with Wegener's
"Each day has it's own
burden.
Carry only what each day contains."
Journals
Please forgive dead links to outside
sites.
Life is too short to keep them current.
Before
Calendar of Diagnosis
& Initial Treatment
July 2003, days before
the Ben's Wegener's diagnosis....
the sheep and giant garden are long gone.
The story begins when our transmission went out on
Steven's Pass...
back to top
|
I never think of the future. It comes soon
enough. Albert Einstein ~2003~ |
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| Visit
to local doc |
Children's overnight |
Children's day trip |
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|
Sun |
Mon |
Tue |
Wed |
Thu |
Fri |
Sat |
| *** = pokes | JULY
17 start of two week vacation |
18 transmission failed on Steven's Pass |
19 Innertubing at Mutiny Bay |
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| 20 Ben sick |
21 Ben sick |
22 Ben sick |
23 Ben sick |
24 Ben to local Dr. W |
25 Ben sick |
26 Ben sick |
| 27 Ben sick |
28* local chest x-ray & blood draw 10:30pm ER Dr. called, midnight arrived at Children's |
29*** noon renal ultra sound, 4pm diagnosis (teams arrived: Renal, Rheumatology, ENT, Ophthalmology, Audiology, Surgery) Steroid IV |
30**** catheter surgery, Foley catheter, dialysis 1hr Plasma Vit K Steroid IV |
31***** eye exam hearing exam Cytoxan IV Steroid IV Mesna Zofran |
AUGUST
1* end of bladder flush dialysis 1hr |
2* dialysis 2.5 hrs Pass Dinner |
| 3* Pass Aquarium |
4 dialysis 3.5hrs |
5 renal biopsy
|
6 Heparin free dialysis 1.5hrs, blood loss Pass Movie |
7 dialysis meds at home: Cytoxan Prednisone Prevacid/Lansoprazole Cefuroxime axetil Sulfamethoxazole/TMP Calcium Carbonate Nephrovite Calcitrol |
8 |
9 dialysis |
| 10 Salmon fishing |
11 dialysis |
12 jugular stitches separated |
13 dialysis |
14 won two trophies at the fair, salmon fishing |
15 dialysis, surgeon ok'd neck Start reducing Prednisone |
16 fishing, fair and Rendezvous |
| 17 fair, Levi and Gena here |
18 dialysis Pike Place Market |
19 | 20*** permacath replacement, heparin free dialysis, surprise overnight stay |
21 took trailer to Ft. Casey |
22 dialysis to 51K, high blood pressure 9 hours after |
23 Ft. Casey with Atticus |
| 24 fishing, overnight at GG's |
25 dialysis |
26 | 27*** check into hospital Cytoxan IV Mesna Zofran |
28 bladder flush |
29 to Ellensburg |
30 Ellensburg Rodeo |
| 31 home from Ellensburg |
SEPTEMBER 1 exit site looks infected, check blood levels |
2 | 3 Nephrology / Rheumatology clinic, check blood levels add Labetalol HCL (bp med) |
4 | 5 | 6 |
| 7 |
8 first day of school |
9*** Non catheter blood check, permacath clotted Double Labetalol dose |
10********* PICU 7:00am found seizing 9:05 airlifted 10:30 stabilized (intubated and heavily sedated) cranial CT scan MRI, MRA, MRV arterial bp line Dilantin Phosphenytoin Valium Ativan Fentanyl Hydralazine Calcium Gluconalc Vecuronium Vancomycin |
11** PICU 5:00am extubated Diagnosis Reversible Posterior Leukoencephalopathy Syndrome probably caused by seizing from hyper tension Very groggy EEG Chest x-ray |
12**** PICU Diuretic Thrush Chest x ray shows Aspiration pneumonia, Left hand cellulitis, Ativan complication, gross motor skills still impaired, failed MRIs, began Nystatin Clindamycin |
13******* PICU Ativan complications, Chest x-ray, peripherally inserted central catheter installed, permacath removed gross motor skills still impaired |
| 14* PICU played cribbage ultra sound of shoulder for DVT 7pm moved to floor Vancomycin |
15* CT lungs and sinus magician therapy dog walking BP meds: Amlodipine Labetalol Isradipene Hydralazine IV |
16*** CT results show lesions on lungs, infection in sinus TB test Therapy dog Music therapy BP still out of control, added Procardia XL |
17* Lung biopsy Chest x ray Clowns visit from social worker and Child Life services BP still out of control, added Enalapril Maleate |
18 Chest x ray gift shop tour Ben made phone calls to grandmas BP still out of control, added Hydrochlorathydroside |
19 Lung biopsy results BP still out of control, added Minoxidil |
20 crew at home emptied Ben's room, began oral, daily Cytoxan |
| 21 dizzy & puking Todd vacuumed heater ducts |
22*** learned to give Epogen injection |
23 | 24 second day of school |
25* Dr.W blood new flooring in room |
26* Dr. W hand |
27 |
| 28 retchy every morning, sleeping until about noon |
29** Dr. W hand |
30 | OCTOBER1* Dr. W blood Dr. W hand |
2 | 3 throwing up from Cytoxan |
4 |
| 5 started oral daily Zofran |
6 |
7 | 8* Neph / Rheum Clinic stopped Procardia XL reduce Tums & Prednisone |
9 Dr. W hurts to breath |
10 started oral daily Mesna |
11 Able to get up and feel OK at 7am, opening day of hunting season |
| 12 | 13 | 14 | 15* Dr. W blood |
16 | 17 Neurology Clinic |
18 |
| 19 |
20 tu |
21 tu |
22* Dr. W blood |
23 | 24 hunting |
25 hunting |
| 26 hunting |
27 hunting |
28 hunting |
29* Dr. W blood |
30 hunting |
31 hunting |
NOVEMBER1 hunting |
| 2 swimming! |
3 |
4 | 5* Neph / Rheum Clinic |
6 Biofeedback Clinic |
7 | 8 |
| 9 S |
10 | 11 Up at 2am for sleep deprived EEG |
12* Dr. W blood |
13 | 14 | 15 |
| 16** Admit through ER for vomiting |
17 | 18 | 19** Dr. W failed IV |
20 Biofeedback Clinic |
21 | 22 |
| 23 |
24* check into hospital Cytoxan IV Mesna Zofran |
25 Stayed at Grandma and Grandpa's because Amanda had the flu |
26 Finally stopped daily vomiting caused by oral Cytoxan |
27 | 28 | 29 |
| 30 |
DECEMBER1* Dr. W |
2 |
3 Neph / Rheum Clinic |
4* Dr. W started vomiting again |
5 |
6 |
| 7 |
8* Dr. W |
9 | 10 | 11 | 12 | 13 |
| 14 |
15* Dr. W |
16 | 17 | 18 Biofeedback Clinic |
19 | 20 |
| 21 |
22*severe vomiting check into hospital Cytoxan IV Mesna Zofran |
23 | 24 | 25 | 26 | 27 |
|
~2004~ |
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| DECEMBER28 vomiting diminishing |
29 | 30 | 31 | JANUARY1* Gen. Hosp. Blood draw |
2 | 3 |
| 4 |
5* blood draw Dr. W |
6 | 7 Cancelled combined clinic |
8 | 9 | 10 |
| 11 |
12* blood draw Children's ophthalmologist |
13 Neurology clinic |
14 | 15 | 16 | 17 |
| 18 | 19 | 20 | 21** check into hospital Cytoxan IV Mesna Zofran |
22 | 23 | 24 |
| 25 | 26 | 27 | 28 Dr. W strep test |
29 Biofeedback Clinic |
30 | 31 |
| FEBRUARY1 |
2* Blood draw Dr. W Dr. B sinus check |
3 | 4* Neph / Rheum Clinic UofW bonescan |
5 | 6* Blood draw Dr. W |
7 |
| 8 | 9 | 10 | 11 | 12* Blood draw Dr. W |
13 | 14 |